peg tube

Tubeless #TSJ

Just finishing her morning routine as I arrived Janet was all smiles but her eyes showed a little apprehension as well. There was no time to spare as we headed for her doctor’s office and the much anticipated peg tube removal. Janet held it together quite nicely right up until her name was called. She calmed down as soon as we got into the room and was totally fine when her doctor came in. I wasn’t though as despite a conversation with Janet’s GI I could tell her doctor had no idea of what she was about to do. Before leaving Connect, Jess had applied a topical anisthetic around the peg site and the doctor was pleased with that work. I asked if she’d spoken to the GI and she said yes and that he repeated, “just pull it out”. And so it began. What should have taken thirty seconds took more than thirty minutes including a call to the GI for further instructions which came back as “pull harder”. Janet was very calm and patient during all of this but when the tube finally came out she burst into tears. Can’t blame her as the suddenness with which the thing loudly popped out surprised us all. In the end it was a good learning experience for us all and even if the doctor had done it a hundred times before there was no other way to do it than pull harder. Now the healing process begins with the hole apparently sealing over within a matter of hours and the wound needing care for a little over a week maybe.

This is me flushing her tube for the last time.

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Before the doctor left I made sure to ask two questions. One was about Janet traveling. Can she? If not, what has to happen before she can? The doctor’s answer was as long as Janet is strong enough to last the time it takes to go somewhere, do it. She recommended some short drives before attempting a flight anywhere and said there is nothing stopping Janet from going anywhere other than her stamina. I think I feel a sushi run to the coast coming on. My other question was about alcohol. I received a shocking yes to this one as well. No harm in having a glass of wine with dinner once in a while. Janet was smiling big as her doctor said this. Never thought I’d get that response ever. Yay!

Janet was absolutely fine within minutes of the extrication and we were on our way home for lunch. She had a well deserved relaxing time before we went house hunting this afternoon. We were visiting a new condo building that I was quite hopeful for but the floor plans are just too tight for someone in a wheelchair. Since we were in the area and needed a nice white wine for dinner we stopped at Discover Wines and thanks to Kris, a former CedarCreeker, we went home with a nice Desert Hills Viognier.

It was kind of late but I tricked Janet into a rest time anyways and as she was laying down she said “I’m pooped” and slept for well over an hour. She would have slept more if she hadn’t been woken up by the dog barking because some other dog was barking. She still loves him though.

Dinner was made even nicer by being able to enjoy the Viognier. It was a nice pairing with our Basa Thermidor.

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Desert was a scrumptious heart shaped macaron for two from Sandrine French Pastry and Chocolate. Thanks Sandrine! The only down side to the day was it was too short. Back at Connect Bob changed the dressing on Janet’s former peg site and coached me on how to look after it this weekend. Janet was happy the day was over and is looking forward to a more relaxing weekend.

Praying for a restful night and a strong day of rehab tomorrow. Thanking Jesus for the progress Janet has made and for all the people that have helped get her here.

Two Sleeps #TSJ

Janet met me in the hallway as she returned from a reading session in the Den. She was quite smiley and chatty saying she was having a good day. She mentioned going to the gym and having lunch and reading and while she tried hard to say what she had for lunch, just couldn’t get it out. Lorne reminded her it was grilled cheese and she smiled big when she heard that. Sensing she needed a bit of a break after reading I lead her to the living room to watch some TV before Brian’s scheduled session at three.

It was good to chat with Brian this afternoon so we could all get up to speed with each other. He reads this Blog daily so is well aware of what Janet has been up to and that enabled us to talk about bigger picture items such as the wheelchair, food and transfers. I requested a few tweaks to the chair before we purchase it and Brian is confident those will be done without problem. He had read about the beef stew incident and I was able to tell him about Garrett’s meal plan that is in writing somewhere and he said he’d find it and follow up on its implementation. He encouraged a discussion with Tez over which form of transfer Janet should be focusing on now. I’ve been using mostly a standing transfer where Tez would prefer using the sliding board probably feeling it’s too early for Janet to do the standing thing and he’s probably right. I paid close attention to our transfers today and although Janet is stepping with her left leg without cueing now I notice she is not really holding her body that straight, I’m doing most of that, and her right leg is taking virtually no weight at all. I’ll use the sliding board between her bed and wheelchair and other chairs and will stand her for toilet transfers.

Time for a bio break after Brian’s visit. Success again! I then had Janet put her laundry away which she seemed quite pleased to do and was happy when she completed that task. I need to find more chores like that for her to do as she is now not at all interested in the board games. The last couple of days she has demonstrated some real assertiveness and I can sense her wanting to do more constructive things. After a brief rest time she started getting up from bed and got a little mad at me for being in her way. I now realize that reaction came from a “I can do this myself” perspective and she did. I backed right off and said nothing and she got herself all the way to sitting and was quite pleased.

We headed down to see what was happening in the kitchen where Garrett was preparing a nice salmon dinner. Janet asked if she could help with anything but most of it was done by that time so we watched a little more TV until dinner was served. Janet really enjoyed the meal and was too full for dessert. We hung out in the living room for a little while after and I threw some family geography questions at her. She did pretty well, correctly answering where she was born, where Andrew lives and where we met. We had a heated argument over where her mom and Keith live with her finally relenting when she remembered we visited them in Collingwood a couple of summers ago.

I have been counting down until Thursday when Janet gets her peg tube removed and think I am more excited about it than she is. Only two sleeps to go! Originally I figured that was because I deal with it way more than she does but tonight it came to the surface that she’s afraid it will hurt when it comes out. I explained as much of the procedure as I know to her and then changed the subject to focus on the more fun things we are doing that day and she calmed down then. The time I’m spending with Janet is split pretty evenly now between moments of heightened awareness and real insightfullness and moments where she just isn’t processing things effectively. We had another talk on the importance of the afternoon rest time this evening as she lost her energy before 7:30 tonight where as when she has that rest she can go strong until 8:30. I got a little bit of a “so what” from her but I think deep down she knows the rest makes a difference. Before bed I read to her a Christmas letter she started writing a couple of years ago that I found while purging some cupboards today. Janet’s writing has always been very difficult to read and this was no different and we both had a good laugh trying to decipher what she had scribbled. Janet says she remembers writing that letter and I believe her as she wrote some things there that are true Janet things to say and I could see the recognition on her face before she even said anything. Cool.

Praying for rest tonight and an active day of learning and recovery tomorrow.

So Long Sunday #TSJ

Another good nights sleep at home for Janet. I think she woke up once during the night, smiled at me and went right back to sleep. I slept better too knowing she was doing fine. The pillow field I laid out for her to land on seems a bit extreme now which is good and I only noticed her rolling onto her right side, which is towards me so not much fear of her falling out of bed now.

Our morning started with her usual breakfast of fruit and yogurt, coffee and a bagel with peanut butter. Everything was finished in plenty of time to go to church. We enjoyed the service and stayed after to have lunch with the Tech Team. It’s such a nice feeling to be able to have Janet out at functions like that and nice for me to re-connect with a special group of people I miss being around. For this occasion Kiko had made some pulled pork and Janet liked it so much she had seconds as well as dessert. We got home just in time to Skype with Leslie, then Andrew. Janet is conversing so much better now and her voice is getting stronger and stronger. She still will get stuck on a word or short phrase and repeat it but also manages to come up with well constructed sentences and questions and her short term memory is improving as well. She even admitted during the chat with Andrew that she was really tired and agreed to have a lay down afterwards.

I had to wake Janet up forty five minutes later so we could have dinner before returning to Connect. She ate well but didn’t seem as enthused with the dinner tonight. Too simple for her I guess. Chicken strips and fries with fresh veggies. She did love the chocolate ice cream for dessert though. Janet had a good day as far as fluid intake goes, drinking coffee, pop and water as well as a cup of tea. I have no concern about meeting that two week target for taking the peg tube out. In fact we may have to do it sooner as when we got back to Connect she complained quite tearfully that it hurt her. I had not cleaned it all weekend so it was a little dirty but it’s been worse in the past so I think I rubbed it or pushed it when I lifted her out of the car. I asked Bob to have the morning crew check it and if it’s still really bothering Janet I’ll have nurse Jen take a look. I don’t think there’s a problem, it’s more likely whatever happened getting out of the car combined with her being really tired and being a little rushed to get into bed and Laurel leaving that all that was too much for her to handle then. I called Bob after dropping Laurel at the airport and he checked on Janet for me and called back to say she was just fine. It was a busy but fun day with a steadier pace than Saturday and I think it set Janet up well for the busy week that lies ahead.

It was a big help having Laurel here this weekend and good for Janet to have quality time with her daughter. The smiles and laughter and sharing time is great therapy. We look forward to seeing Heather in a couple weeks. Praying for a well deserved night of rest and healing and a fun day of recovery and learning tomorrow.